Hi Pat, So glad to hear that the groundwork for the trial is progressing so well!

Funding, though, is really a problem now for any medical research. The budget cuts and the sequester have been devastating to NIH and to medical research in general. Existing studies have been cut, some very dramatically (I have seen cuts of up to 50% in cancer projects and dementia projects i work with.) And the funding line for new studies is uncertain but likely to be pretty bleak. NIH is hesitant to commit even to the very best and most promising studies until they have a better idea what's going to happen over next few years.

So, at the risk of being polemical, I would like to suggest that people who want to see studies like this get funded write to Congress and tell them your concerns and priorities. If enough of us advocate for medical research, maybe we will be able to have some impact.

Great idea, Laurel. Thanks for informing those of us who are unaware. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sat Jun 15, 2013 6:32 am

Pat

Joined: Sun Jun 24, 2007 5:35 pmPosts: 349

Re: promising drug, hopeful for lewy body and pk!!!!!!

Laurel, good idea! We all need to do that.

And reading this from you reminded me that I even though I posted your lay summary of the preliminary work for this study on the caring spouses forum, I forgot to post it here!! How could I forget that????? Oh, well, here it is for all to read.

The link below is a result of lots of work by our Laurel here on the forum. She is a researcher in a dementia lab at U of CA at Davis. I asked her to give me a lay summary of the background work that led to this Phase 2 clinical trial study. Laurel graciously took her own time to help me understand it by creating what you will see in the link below. She insists that I say that she did this work quickly and not to hold her to her typical professional standards, but I think it is a wonderful lay summary of what has been done so far with this drug in mice experimentation. Thank you , Laurel, for doing this so we can all have greater understanding.

.....I could not get the link to attach, so send me a personal email if you want to see Laurel's lay summary at patsnyder137@gmail.com You will need Adobe Reader (download it for free) on your computer to see it.

Also, I just spent about 30 minutes composing my email to our US congressional representative and Senators. I copied the same one to all three. It feels good to have done that.

I have met in person with my congressman and I know he has a strong and long-standing commitment to healthcare and research. Hiis daughter-in-law is in public health research and I was one of her mentors when she was a young faculty member here. So I know he is hearing this at home, too. I write to my senators pretty regularly and always advocate for our research concerns.

You can find more information on the impact of the sequester here: http://www.nih.gov/news/health/jun2013/nih-03.htm (I am hoping this link will work properly!) As they note, even though the cut is nominally 5% across the board, it has a disproportionate effect for several reasons. First, it's retroactive, so we have to absorb a full year's cut in just a few months. Second, some grants or projects may be cut more than others; the institutes can decide to cost-shift within an area.

And thanks for kind words about my summary, Pat. I hope it helps others, too! I can try to post here next week - it's not on this computer, unfortunately. Laurel

Good work, Laurel and Pat! I'll write my elected officials right away about these crucial issues.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Jun 16, 2013 9:39 am

cdw

Joined: Fri Nov 05, 2010 11:30 pmPosts: 318Location: southern cali

Re: promising drug, hopeful for lewy body and pk!!!!!!

has any one heard any news on this study?? i wrote a few months back and nothing. one gal on another board, got a answer.... they were waiting on funding??

Cindi, I am aware of the article coming out in mid-May of this year, so that is all I know except after writing Dr. Scott Turner to express interest in registering my husband for the Phase 2 clinical trial, he said it would be a few months to get funding together and they were hopeful. He said they are seeking private and public funds.

Here is the email address again if you want to try it. He was very prompt in returning my email. Of course, it is vacation season right now.

Pat, I just sent a note to Dr Turner to get my wife on the list. Her Doctor is Dr Pagan from Georgetown who is involved with this study. It sure seems promising. It would be so great for us to see our loved ones enjoy life again. My wife has had PD since 2004 and LBD diagnosis was in 2008. THey say it is a moderate case as she just has great difficulty moving from sitting. Once up I stay near her only because of the Lewy Lean backwards. Her cognition is bad at times but she does remember me most of the time. I am praying very hard for all of us. I live in Dumfries Va and only about 30 miles from DC and less to Dr Pagan Satellite office for Georgetown.

Tue Aug 13, 2013 6:48 am

mariesmac

Joined: Mon Mar 08, 2010 9:32 pmPosts: 120Location: Dumfries Va

Re: promising drug, hopeful for lewy body and pk!!!!!!

Pat waht is Dr. Moussa email? I woudl like to contact him as well even thought Marie's doctor, Dr Pagan is working with him.

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